News

It is with a heavy heart that we announce the passing of 5 year old Jasper. In a nationwide tribute, we'd love for you to join us at 1:45 Central Time on Saturday, September 6, 2014 (shortly after his memorial service) to release "Balloons for Bubba". Be sure to video tape the releasing of your Blue, Red and White balloons and share on the Lesch Nyhan Syndrome Facebook Group Page.

On Saturday afternoon we had a roundtable discussion. We received great advice and ideas from the parents and other people experienced with the day to day care of LNS patients.

The main areas that we discussed were respite care, restraints, behavior, sleeping and therapy.

Respite Care and Home Health Care

In the area of respite care and home health needs Michelle Lucas shared her wisdom and insight on what resources are provided by the state or local services. You can contact Michelle at mllucas72@yahoo.com or 319-961-0398. All of the moms that do use these services could not encourage enough the support and care they have received. Home health care is available in every state. You are able to hire or to elect someone you know as a home healt aid.

Each state has it's own rules and regulations about the care available. You will find resources under such things as ill and in need children or under Intelectual Disability which allows medicaid to assist you and your child. You are welcome to contact Michelle with any questions.

Self-Protective Devices

Next, we discussed restraints and the first thing mentioned was to not call them restraints, but to call them self-protective devices!! This is especially important when you discuss your child's care with the state health representative. LNS is very misunderstood and it is up to the parent to educate other people about what is necessary.

We had some fantastic ideas from some of the moms attending.

One mom shared that her son has difficulty with his head dropping or banging. To help with this tendancy, he wears a hat! He simply wears a baseball cap with a small strap attached to his wheelchair. She loops the strap through the small hole in the back of his baseball cap and attached the other end to the wheelchair post behind his headrest.

Another mom showed and explained a number of devices that her son uses. He was struggling with his knee braces as he was able to hurt himself on the standard knee guards. She was able to adapt the rib holders from a different wheelchair into knee guards. She also invented beautiful wrist and ankle cuffs for her son. They are small soft fabric wrapped in cloth belt loops and snapped in to his wheel chair. She also invented straps which attach to the bed. They allow her son to move in bed, but not to roll or thrash in any way that could allow him to get hurt.

These were some terrific ideas and I will be posting pictures as soon as possible to help anyone get their own thing started.

Behavior

LNS has many behaviorial aspects that are uncommon and inexplicable to the 'normal' way of thinking. The parents had advice to share about helping children with some of the behaviors.

1. Not showing your emotions and frustrations is very important when caring for LNS patients. It is very difficult not to show your emotions, but it is one of the most important things to remember. LNS kids react very poorly to negative emotions. It creates anxiety in them and the anxiety feeds the self-injuring behavior (SIB).

2. Pillows can be used as a way to hurt themselved, specifically to suffocate.

3. Screaming and yelling are common. They will do this until you are gone, but will eventually settle after you have left.

4. Be careful what you say about them. They are very perceptive and will come up with their own ideas about a topic. For instance, one mom said that she was taking her son for treatments in California. The son came up with the idea that the treatment would heal him. This situation caused great anxiety and distress for the whole family. The son became angry with his disease and he had truly believed that he would be cured.

Dr. Cooper from the University of Iowa joined the group on Saturday, August 24. Dr. Cooper is a wonderful man and a caring doctor. His specialty is urology. He has worked with multiple families with LNS, he is and will continue to be a great advocate for LNS.

He took the time to speak with each family about their kidney needs and how that effects urine in LNS patients. He encouraged us greatly on our journey with Love Never Sinks and especially to the families that attended the conference.

Dr William Nyhan, the discoverer of Lesch-Nyhan participted in the conference on Friday, Aug 23, 2013.

He informed us of an upcoming trip he is taking to Italy where he will be attending a conference regarding a medicine that may help with some of the purine salvage with LNS. It is a medicine that they are currently testing on cancer patients and Dr Nyhan hopes that it can be helpful for LNS patients as well.

He discussed the compications with finding the right dosage of allopurinol. Higher dosages seem to cause xanthine and hypoxanthine stones n the kidneys while low doses seem to allow the uric acid to build up and cause kidney stones. He said that the best way to address this issue is to monitor the dosage frequently by taking a blood test to check the uric acid levels. The most important time to check frequently is upon initial use of allopurinol. The first six months to a year is invaluable at finding the right dosage for your child.

Dr Nyhan was extremely gracious and welcomes families to contact him with any questions or concerns about LNS. He can be reached at the Univeristy of San Diego. He can be contacted via email at eltaylor@uscd.edu, by phone at 619-543-5260 or 619-543-5237

The conference was a wonderful success! We had eight families join us! They came from Minnesota, Ohio, North Carolina, Iowa, Illinois, Missouri and Oklahoma! It was a pleasure to meet everyone and a trhill to see so many LNS boys together in one place!

On Thursday night we greeted everyone with a pizza party and a few of us took at dip in the pool at the home of Michelle and David Lucas. The whole weekend owes a huge thank you to both of them for all of their generosity, kindness and for opening their home to all of us!

The Meet and Greet Conference is coming in just two weeks! We are so excited about this venture, about being able to be a part of the Lesch-Nyhan Community and especially about meeting everyone! As a reminder, the events will all be held August 22-25, 2013 in Clarksville IA.

The itinerary will be flexible, relaxed and fun:

Thursday Aug. 22 Anytime after 4:00 Pizza Party at the home of Michelle and David Lucas 508 W Jefferson St Clarksville IA 50619 We will have welcome packets available at this time

Friday Aug. 23 10:00-6:00 We will be meeting at the AmVets Hall at 102 E Green St Clarksville IA 50619 (on the corner of Main St, right next to Casey's Gas Station) This is the day Dr. Nyhan will be with us! He will be avaialbe for questions and answers and is so happy to get to know everyone!

Saturday Aug. 24 10:00-6:00 We will meet again at the AmVets Hall. This is the day Dr. Cooper a urologist, Jamie a behaviorial therapist, and a pediatrician familiar with LNS will all join us for information sharing, questions and answers!

Sunday Aug. 25 10:00-12:00 Send Off Bruch at the home of Michelle and David Lucas

Again, we can't wait to see everyone! Please contact us if you have any further questions!

Things have really started to get rolling for Love Never Sinks! We have ordered some bracelets, which you can see on the photos page. We are so excited to show off our new logo that was so generously donated to us! LNS T-shirts are also in the midst of getting created and we hope to have them available for sale at the Kick Off Meet and Greet in Clarksville IA August 22-25.